. . . a funny old life with multiple sclerosis

Tag Archives: heat intolerance

I didn’t mind too much; I’d had to stay at home during the height of the sudden heatwave and had ploughed my way through numerous box-sets on telly, fanning myself with one of The Teenager’s discarded school files.

I was hot, bored and bothered. MS heat intolerance is miserable.

Friday was The Teenager’s last official day at school. Ever. I unpinned his timetable from the notice board in the kitchen with a deep, sad sigh. I woke him up for school for the last time, waved him off to his last ever school assembly, with his last ever lunch money in his pocket. He popped back briefly a couple of hours later and I daubed his face with camouflage make-up, hung dog tags around his neck and waved him off again.

He was taking part in the Sixth Form Leaver’s tradition – a pub crawl around the local area, ending up in the city centre. This year’s theme was ‘military’ (last year’s was ‘American Football’). There’s a long road between pubs outside my house and every year I see the endless line of kids walking past, chanting loudly. Perhaps with Manchester in mind, watching the procession of students walk past dressed in various forms of khaki, singing ‘Don’t Take Me Home‘ made me cry.

That was 2pm. I heard him come back home at 3am, rise again at 5am and leave to get the train/bus/tram to Manchester to watch one of his favourite bands at Old Trafford. Plus, he’d remembered to lock the door and let the cat out. Impressive.

Anyway, on my way to work this morning I stopped off at a local shop to pick up some lunch. I was wandering around the aisles, debating microwave lasagna vs. chicken pieces when, wham, I went flying. Foot drop? Nope. Someone had left an empty basket in the aisle, one of those wire ones, so not readily visible. I picked myself up, a little bruised and embarrassed. I heard laughter. I turned round and the woman at the counter was looking at me and … laughing.

Not asking if I was ok, not coming over to help. She stayed behind the counter. Laughing. I kicked the basket. It knocked into a display of sun-cream (Are You Protected?) which wobbled a bit and a few bottles fell off. I kicked them too, the irony of sun cream too much to bear.

I picked up some chicken pieces and went to the counter. She was still laughing. I asked if she was serious. She said, ‘You wha’?’, raised an eyebrow, finished checking her phone and rang through my items with a studious boredom that was actually pretty impressive.

I got to my car. Took several deep breaths. I should have gone back. I could have kicked myself along with the sun-cream.

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After almost three years of MS-and-self-imposed exile, I am slowly but surely reintroducing myself to polite society.

My cunning strategies seem to be working. Often it’s the small(ish) things.

Such as, I hate the heat and it hates me back with a blazing passion.

Now though, rather than worrying about my tomato face, I plan a set time outside, give myself one last blast of the air-con and pop on the sunglasses.

I can often be found lingering at the chest freezers in Iceland and worry they’ll ban me soon as I only ever buy eggs.

Who cares if I’m bright red? I’m out, it’s enough. And when my legs start to buckle I know it’s time to grab a Slush Puppie and head back to the car, mission accomplished. When I’m in work, the boss agrees to go easy on me as long as he can still laugh when I stumble. Who cares? We’re good friends going back years and I don’t want anyone to tip-toe around me (wish I could do that without losing my balance and falling over – sigh).

As regular readers are aware, I’ve also signed up with a personal trainer. Who’d have thought it even a few months ago? My Nike joggy bottoms didn’t arrive in time for my first session, but who cared that I turned up in jeans and an Andy Warhol t-shirt? Certainly not the trainer who still made me learn how to execute a perfect squat, which was surprisingly difficult. Ceiling to floor length mirrors didn’t make the job any easier. But I did it. And I’m going back next week.

Only problem is, I got a little bit carried away afterwards. The Teenager came home from school to find me saying, ‘hey, look, look at this! (squat) look what I can do! (squat)’ Naturally he was less than impressed and retreated backwards to his bedroom, on his phone, no doubt tweeting my sorry plight to his mates. I paid for it the next day though, barely being able to walk down the stairs. Pesky muscles screaming in shock at being used for the first time in years.

Anyway, I finally knew that I was officially ‘back’ on Saturday. I’d arranged to meet a good friend for dinner, meeting first at his place. Great. Did my hair, got dressed, fed the cat and left. I knocked on his door:

Him: (spluttering and looking back longingly at his Lord of The Rings dvd on pause) But, honestly, I really didn’t think you’d turn up. You’re always so tired. Was expecting a text from you to say you couldn’t come. As usual. You okay?

Me: I’m good. I’m great! I’ll wait, you get ready. Got any chocolate in the fridge?

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We’ve had a very trying weekend and things came to an explosive head on Saturday evening.

The Teenager: WHY are you so tired just now? WHY’S your face all red? WHY are you hugging the fan? Oi, WAKE UP! Mum, mum, mum, mum, mum, mum, muuuuuuuuuuuuuuuuuum. Can I have a Dominos?

Me: I’m awake. You’ve just had dinner so you can’t be hungry. And we’ve talked about this before. Sweetie.

Teenager: Yeah, you get…..tired…..and hot….and grumpy……and, I mean, like, I get tired and hot too. My X-box gets hot. The cat gets hot. And it’s summer, like d’uh. And I’m hungry all the time coz I’m growing. So ner.

Slammed door. Me, in pieces on the sofa.

How can I explain to him? I wrack my heat-addled brain, jot down a few points then fall asleep.

Later that evening, he thumps downstairs and I swiftly intercept him on his way to the fridge. We sit on the sofas. He slumps, like, whatever, working his way through two Müller Corners, a croissant and the lollipop he gave me earlier (the one I was keeping for later).

Anyway, here goes. Keep it simple. Ok. Heat intolerance – imagine you’re in a sauna and the door is locked. An hour later, exhausted and gasping for breath, unable to think clearly, you have to put the oven on and cook dinner. (at this point, The Teenager plays his trump card – ‘you could have called Dominos, dur’). Smug grin. I calmly continue; then you have to make a few phone calls, reply to some emails, do the laundry, feed the cat and water the plants. All the time you’re feeling hotter and hotter. The bits in your brain start to melt in the heat and send out the wrong messages and your body just doesn’t do what it wants to.

The Teenager: Oh. I get like that when I’m on the rugby pitch, for like, hours.

Me: Exactly! Imagine they won’t let you off the pitch to have some water. They’re pushing you to keep on going. You’re boiling.

The Teenager: Oh. ‘K. So why are you so tired. Tired, tired, tired, all the time. S’not fair. All the other mums don’t get tired. S’not fair, s’not.

Right. It’s not really tiredness like you know. It’s kind of the same as when I get hot. My brain (Teenager sniggers) gets tired out from working extra hard to keep sending the right signals so it gets tired more quickly than, say, your brain (snigger). That’s why I have to sleep a bit more, to rest it a little.

Did I get the message through? I wander through the house, fretting. Until I come across my lovely, neat desk. Everything in it’s place. Except, under my goldfish paperweight there’s a takeaway pizza menu, topping choices thoughtfully highlighted by The Teenager.

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For the last two years I seem to have been lying low, coping with everything MS had to throw at me.

I didn’t realise just how much the parameters of my life had altered until I went to London on Monday.

I wasn’t particularly worried beforehand – I’d lived and studied there for a couple of years, I loved the buzz, the people, the sheer energy the city pulsed with. So I trotted off, took my seat on the train and prepared to reignite my passion for the city.

The first inkling things weren’t quite the same as before happened seconds after disembarking at Paddington. Where had all these people come from? Oi, why did you just barge in to me? Where did I put my ticket? Help.

I was swept along by an unforgiving tide of people to the tube station, buffeted from all sides, whimpering, with panic levels going through the roof. What was wrong with me? I used to do the exact same journey with a howling baby, pram and suitcase in tow.

My legs had turned to jelly, my face was bright red with stress and heat as I tried to quell the rising anxiety. I collapsed on to a seat in the tube train, a chattering bunch of Italians clutching maps and water bottles swaying into me every couple of seconds.

After my meeting (which was brilliant), I did the reverse journey in the same disheveled state. I needed to get home. By teleportation if possible. Or helicopter. Over lunch before getting back on the Cardiff train, I discussed this with my friend. ‘I don’t understand!’ I wailed, picking at my fish and chips in a ye olde English pub. Had I really changed that much? Out of my five-mile radius comfort zone, it appeared I had. Gone was my fearlessness and energy. I knew my energy levels weren’t the same as before, but had they really plummeted so low?

Finally, I made it home. I was a mess. Every nerve was trembling, I was exhausted and mentally shattered. It took me a whole day off work to recover, where I hid at home, coming to terms with what had happened. Reality smacking me right in the face.

I’m shocked. I knew things were bad, just not that bad.

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The weather forecaster on telly, wearing a short-sleeved shirt and stupid grin, could barely contain his excitement. ‘You’ll be pleased to hear this lovely sunshine will be continuing right into next week, folks, so get those barbecues fired up!’

I chucked another toffee wrapper at the screen and shifted the bag of frozen peas perched precariously on my head.

Then the forecaster turned on his sad face and sighed, ‘but it’s not all fun in the sun (dramatic pause), children, elderly people and those with chronic illnesses, take extra care!’ It feels strange to be in that category now, a bit like when you move up a section on the ‘tick your age bracket’ question on forms.

The country’s gone mad. I pass the time of day peering through my window, counting all the men who really should know better than to parade their naked, tattooed bellies to an unsuspecting public. Newspapers eagerly tell us we’re hotter than Spain, France, Morocco. Shops have been stripped bare of ice lollies, burger buns and cider. £5 paddling pools are changing hands for £50 on Ebay.

Which is all well and good, but we just don’t do hot weather in this country. Same as we don’t do snow. Our European cousins would frown upon our fondness for frolicking around in garish ‘summer clothes’, gnarled feet shoved into plastic flip-flops, downing lager like there’s no tomorrow. They’re the ones who coolly sip an espresso in a shady cafe, clad in perfectly coordinated outfits, chic neck-scarf tied in the way only Europeans can manage.

Frankly, us Brits embarrass ourselves. So, I am going to turn MS heat intolerance to my advantage. I will cultivate a Euro-chic demeanor. I will re-name my afternoon MS fatigue sleep a siesta. I will stay out of the midday sun and embrace my Celtic paleness. If I venture out at night for a drink , I will walk primly past the sunburned sun-worshipers. I won’t be hosting a barbecue, but will instead sit in an dark, arty bar talking about arty things and existentialism.

So all you MS peeps with heat intolerance, join me in my one-woman mission. If I can just get that knot right on my neck-scarf, I’ll be right with you.